Aa
endstage
like everyone else there are no clear answers for endstage hep c or chirrhosis. I find this frustrating. Im in early varices and hep c has returned. What time frame does one have once theres no response to treatment??? How can anyone afford a transplant?? or the lifetime meds for anti-rejection. Since this is one of the number one killers in the US now why isnt our government helping??
last yr diagnosed early varices, my spleen was enlarged in 08 and told end stage then by GI Dr. since 2011 my liver has started hardening, I take lactulose for ammonia levels portal tension is high, fluid retention ascites, hep c returned last year, GI said he would not recommend further hep c treatment, platelets 85, iron high and have the skin lesions that are getting worse now have respitory infections and Im sorry what part of endstage do I not have??? they dont know why Im going into failure yet I guess because of my faith in God and he continues to sustain me....hm.
P.S. You are not "End Stage" until the liver is no longer able to perform all of its functions. At that point you will have the classic complications of decompensated cirrhosis (End-Stage Liver Disease).
These are a few of the complications that can develop. Not everyone has all complications.
Esophageal varices - extremely dilated veins in the lower esophagus. They are most often a consequence of portal hypertension,
Abdominal swelling or bloating - From fluid retention
Weight gain - From fluid retention
Swelling in ankles and legs (edema) - From fluid retention
Encephalopathy - confusion, delirium, personality changes, or hallucinations - from buildup of drugs or toxins in the blood, which then affect the brain
Difficulty breathing - From fluid retention
Jaundice - Yellowing of the skin and eyes from deposition of bilirubin in these tissues.
Itching - From deposition in the skin of products of the breakdown of bile
Sensitivity to medications - Due to impairment of the liver's ability to filter medications from blood
Extreme sleepiness, difficulty awakening, or coma - Other symptoms of encephalopathy
Bleeding from gums or nose - Due to impaired production of clotting factors
Easy bruising - Due to impaired production of clotting factors
Blood in vomit or feces - Due to bleeding of varicose veins caused by liver congestion
Hemorrhoids - Varicose veins in rectum due to liver congestion
Loss of muscle mass (wasting)
In women, abnormal menstrual periods - Due to impairment in hormone production and metabolism
In men, enlargement of the breasts (gynecomastia), scrotal swelling, or small testes - Due to impairment in hormone production and metabolism
Hector
These are a few of the complications that can develop. Not everyone has all complications.
Esophageal varices - extremely dilated veins in the lower esophagus. They are most often a consequence of portal hypertension,
Abdominal swelling or bloating - From fluid retention
Weight gain - From fluid retention
Swelling in ankles and legs (edema) - From fluid retention
Encephalopathy - confusion, delirium, personality changes, or hallucinations - from buildup of drugs or toxins in the blood, which then affect the brain
Difficulty breathing - From fluid retention
Jaundice - Yellowing of the skin and eyes from deposition of bilirubin in these tissues.
Itching - From deposition in the skin of products of the breakdown of bile
Sensitivity to medications - Due to impairment of the liver's ability to filter medications from blood
Extreme sleepiness, difficulty awakening, or coma - Other symptoms of encephalopathy
Bleeding from gums or nose - Due to impaired production of clotting factors
Easy bruising - Due to impaired production of clotting factors
Blood in vomit or feces - Due to bleeding of varicose veins caused by liver congestion
Hemorrhoids - Varicose veins in rectum due to liver congestion
Loss of muscle mass (wasting)
In women, abnormal menstrual periods - Due to impairment in hormone production and metabolism
In men, enlargement of the breasts (gynecomastia), scrotal swelling, or small testes - Due to impairment in hormone production and metabolism
Hector
You are incorrect when you say there are no clear answers about cirrhosis and decompensated cirrhosis (End-Stage Liver Disease). (There is no such thing as endstage hepatitis C). Hepatitis C causes liver disease. It is the liver disease you are taking about that presents the need for a liver transplant.
You mean you have mild varices? But no bleeding is that correct? As long as you don't show signs of liver failure you still have time to treat the hepatitis C although the odds of success are lower then persons with healthier livers and you will probably experience more issues as far as keeping some of your blood levels within a safe range during treatment. But these are minor issues compared to liver failure. If you are genotype 1 there are new treatments available that will give you the best odds ever of clearing the virus. Treatment duration is for 48 weeks.
* What time frame does one have once theres no response to treatment?
No one can say. We are each individuals. You could stay compensated, essentially symptom free, for many years or your liver could begin to fail at any time.
* How can anyone afford a transplant?
You must have some form of health insurance as a transplant costs many hundreds of thousands of dollars and you must take medicine and be monitored medically for the rest of your life. Even without a transplant, managing cirrhosis over time is very expensive. Tens of thousands of dollars per year. Blood tests, scans, doctor visits, etc, etc.
* Since this is one of the number one killers in the US now why isnt our government helping?
The government is funding research into liver disease. The main problem with liver failure and the needs for transplants is there are not enough donated organs available for all the people who have End-Stage Liver Disease who need a transplant to live. That is why people die every day waiting for a donor liver that doesn't become available in time to save their life. If you want to do something about it volunteer with your Organ Procurement Organization (OPO). Every person who becomes an organ donor can save up to eight peoples lives.
Follow this link
http://www.transplants.org/LinksResources.php
Choose "Organ Procurement Organizations"
Choose one in your area.
Find out how you can help.
Hector
You mean you have mild varices? But no bleeding is that correct? As long as you don't show signs of liver failure you still have time to treat the hepatitis C although the odds of success are lower then persons with healthier livers and you will probably experience more issues as far as keeping some of your blood levels within a safe range during treatment. But these are minor issues compared to liver failure. If you are genotype 1 there are new treatments available that will give you the best odds ever of clearing the virus. Treatment duration is for 48 weeks.
* What time frame does one have once theres no response to treatment?
No one can say. We are each individuals. You could stay compensated, essentially symptom free, for many years or your liver could begin to fail at any time.
* How can anyone afford a transplant?
You must have some form of health insurance as a transplant costs many hundreds of thousands of dollars and you must take medicine and be monitored medically for the rest of your life. Even without a transplant, managing cirrhosis over time is very expensive. Tens of thousands of dollars per year. Blood tests, scans, doctor visits, etc, etc.
* Since this is one of the number one killers in the US now why isnt our government helping?
The government is funding research into liver disease. The main problem with liver failure and the needs for transplants is there are not enough donated organs available for all the people who have End-Stage Liver Disease who need a transplant to live. That is why people die every day waiting for a donor liver that doesn't become available in time to save their life. If you want to do something about it volunteer with your Organ Procurement Organization (OPO). Every person who becomes an organ donor can save up to eight peoples lives.
Follow this link
http://www.transplants.org/LinksResources.php
Choose "Organ Procurement Organizations"
Choose one in your area.
Find out how you can help.
Hector
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